My 10 year old daughter needs help. I think maybe I had Lyme when I had her which adds another layer to the complicated symptoms she exhibits.
She was on antibiotics orally for about 7 months. It seemed to help though then the doctor switched her to herbal and supplements, andrographis and Serra Peptase.
The last time we were there and I mentioned her symptoms worsening and returning, he told us to seek another opinion from a pediatric doc and referred us to one in Maryland who ha surprise, doesn't take insurance.
Before I make the appointment though I would like to become knowledgeable on what treatment is available and preferred for her specific symptoms which are predominantly difficulty remembering, speech issues (stutter), bladder and very recently bowel incontinence.
She is getting older and I see these things affecting her school and personal life.
It's completely heartbreaking.
Please help with advice if your child has been treated successfully or if you are educated on this type of Lyme. Thank you
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Breaking up the post for easier reading for many here -
[ 06-09-2015, 11:43 AM: Message edited by: Robin123 ]
Posted by Ann-Ohio (Member # 44364) on :
If you go to "Seeking a Doctor" on the "Hop To" selection on your right here, you can probably get some more choices of a pediatric doctor who treats Lyme disease in your area.
Also, if you go to "Support Groups" on the menu upper left of this page, you can find people in your area to discuss things and maybe some doctor recommendations.
Also, check out ILADS.org to see if you can find a doctor they have trained to treat Lyme disease.
Ann
Posted by hopingandpraying (Member # 9256) on :
Welcome to Lymenet! PM sent for PA.
I would also suggest you write a new post in "Medical Questions" to see if anyone can offer up some more advice.
Your dear daughter needs to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
Was your daughter under the care of a LLMD?
They are far and few between, unfortunately. You need to go where they are.
Also most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner to see a LLMD by doing this.
I was reading some old posts on Lymenet which suggested the incontinence might be caused by Bartonellosis, one of the co-infections which come with Lyme, and that a visit to a LL Pediatric Gastroenterologist is needed.
Perhaps your daughter should be checked for PANDAS/PANS? Here is a link to the website for more information:
Btw - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this, click on the pencil/paper icon, make your changes, then click on "Edit post". Thanks.
[ 07-02-2015, 09:59 AM: Message edited by: hopingandpraying ]
Posted by LanasLyme (Member # 45989) on :
I have Lyme as well so fortunately am somewhat knowledgeable (always more to know despite lots of research time) and have been thru neurologists, infectious disease, family docs.. Yeah they all want the quick fix and easy diagnosis. This is far too complex for managed care and most don't want the controversy of treating this in their practice. She was on antibiotics azithromycin and cefdinir, for probably 7-8 months and really saw improvement. We switched over, docs suggestion to take a break from the medication, and have been taking Byron white A-Bart daily, up to 8 drops now, as well as one tablet of an andrographis formula with echinacea and holy basil along with Serra Peptase one tablet a day for biofilms, which I believe has helped ward off ear infections she used to get. Haven't thought of pandas for a long time, thanks I will check it out! We are going to see a Dr. S in Maryland in two weeks, someone who her current PA doc suggested. Dr.C. You would think one would be more likely then to be compassionate to other parents but given the ridiculous fee (and I'm ok paying out of pocket, I understand the reasons) hers was exorbitant. I'll see what this doc has to say. I think she really needs something aggressive to knock it out and keep it away to avoid long term damage neurologically. Thanks for the information and support!
[ 06-12-2015, 10:22 AM: Message edited by: faithful777 ]
Posted by Joe Bob (Member # 45015) on :
I thought my daughter had Pandas. I feel like magnesium helped her. She is 15 and is 6 months into lyme treatment. She had lyme since birth we believe.
Posted by LanasLyme (Member # 45989) on :
Thank you. I know with Lyme there is magnesium deficiency. Interestingly, I believe my daughter had it since birth as well since I must likely had it since I was a teen. Post delivery I got very sick with high blood pressure and elevated liver enzymes, magnesium drip is what they gave me. I have been researching Lyme extensively for a few years now and it's amazing how the pieces to the puzzle start coming together.
Good luck with your daughters treatment. I pray it gets resolved and she can live a beautiful life without restrictions.
Posted by LanasLyme (Member # 45989) on :
By the way, Epson salt baths have magnesium and are a great way to detox the toxins let loose by treatment.